Ms Kathleen O'Meara:

We thank the committee for the opportunity to speak here today and we commend it on its consideration of the issues which are raised by the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, in the area of health and well-being. The Not for Profit Business Association represents some of the largest providers of services to people with physical, sensory and intellectual disabilities. The members of the association work to effect positive change in the lives of the 40,000 people who use our services. We believe that ratification and, more importantly, implementation of the convention will enshrine the equal rights of people with disabilities to live in a way and in a place of their choosing. It is incumbent on Government, public services, service providers and society as a whole to make this aspiration a reality.

Prior to its adoption in 2007, Ireland showed great leadership in negotiating the convention, which has been well recorded. However, a decade later, we have not been so pioneering. Ireland, as was stated already by my colleagues, is the last country in Europe to ratify the UNCRPD. There are actions required prior to ratification but the process has so far has been characterised by delays. Some progress is being made with the Disability (Miscellaneous Provisions) Bill 2016 going through the Oireachtas, although large parts of this legislation remain unpublished, the enactment of the Assisted Decision-Making (Capacity) Act 2015 and the Criminal Law (Sexual Offences) Act 2017. Some progress is being made. Ratification is dependent on enactment rather than on commencement of legislation and on the development of laws rather than the achievement of quality-of-life improvements for people with disabilities in Ireland.

In the past ten years, austerity has impacted significantly on public services, particularly health services and social protection. The UNCRPD requires states to recognise that people with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination. This is an area where no new law is needed but where Ireland falls short in terms of provision for people with disabilities. People with disabilities are not sick but they are more likely to suffer ill-health. Census 2011 found that just 16.5% of people with a disability indicated they had very good health compared to 66.9% of those without a disability. Almost 11% of people with disabilities indicated that their health was bad or very bad in stark contrast to just 0.1% of those with no disability. Many things contribute to poorer health outcomes for people with disabilities such as poverty, inappropriate housing, difficulty accessing transport, lack of employment and education. People with disabilities are disproportionately impacted upon by cuts in health spending and by waiting lists and delays. Low incomes mean that they do not have the ability to mitigate the impact of these delays by buying services, which is par for the course for other members of the population. Low disposable income and increased costs of living also limit people’s ability to look after their health and well-being through things such as purchasing good, healthy food, activities to maintain good mental health and social activities.

Things that the rest of us take for granted can be major barriers to accessing appropriate health care and supports for well-being for people with disabilities. I will give some examples. A lack of access to information and advice in a format and manner that suits the person's needs, such as access to an Irish Sign Language interpreter, limits the control individuals have over their own health. A lack of hoists and access in GP surgeries often unnecessarily escalates minor conditions to hospital admission. A lack of modern legislation to support autonomous decision-making has often excluded people with disabilities from decisions about their health. The enactment of the Assisted Decision-Making (Capacity) Act will change the law but we need to change the culture through greater health literacy and emphasis on self-management. There is a lack of equality when it comes to enabling people with disabilities to access screening, health promotion and sexual and reproductive health services. A lack of appropriate personal assistant, PA, supports makes it difficult for people with physical disabilities to go about their daily activities or access health services. There are also inconsistencies in access to PA supports within the hospital system. A lack of appropriate housing leads to inappropriate placement of younger people with disabilities in nursing homes and limits their independence, choice and social integration which impacts on their health and well-being.

The United Nations convention does not open a locked door to greater equality and better services. That is not what it does. That door is already open to us. Nothing says that we need to wait for ratification to take steps to make Ireland a far better and fairer place to live for people with disabilities. Investment in better access to health services for people with disabilities needs to be a priority now for budget 2018. Equality-proofing all public investment would ensure that Government spending always promotes inclusion.

Following ratification, Ireland’s record will come under review by the UN Committee on the Rights of Persons with Disabilities. It will be the real experiences of people on the ground that will count rather than the list of legislation in place. People with disabilities are the greatest users of health services but are the least provided for. Practical change is needed in addition to legislative change if Ireland is to achieve both the word and the spirit of the UNCRPD.